Adult Cystic Fibrosis patients can provide important information that helps to predict their prognosis, according to research that asked 223 adult CF patients to assess their own health and well-being.

"We wished to see whether patients themselves had clinically relevant insight to their disease, and we found that they did," said lead author of the study, Janice Abbott, Ph.D., of the University of Central Lancashire in England.

The study was published in the first issue for January of the American Thoracic Society's American Journal of Respiratory and Critical Care Medicine.

Prof. Abbott and colleagues administered 223 CF patients the cystic fibrosis health-related quality of life questionnaire (or CFQoL), a validated self-assessment tool, then followed them for 10 years. Patient outcomes were analyzed with respect to their initial self-assessment of their quality of life. After controlling for demographic factors and the severity of the disease, researchers found that several domains of patient-reported quality of life can help to predict mortality. The most important aspects were perceived physical functioning and the presence of pain. Specifically, patients reporting a lower quality of life were more likely to die sooner than those who perceived their quality of life to be higher.

"The most surprising result was the importance of patient-reported pain in predicting survival in cystic-fibrosis," wrote Dr. Abbott. "This work provides credibility for the use of patient-reported measures in clinical trials in CF, as it provides evidence that patient-reported outcomes can predict mortality."

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